Nominations Sought for Federal Family Caregiving Advisory Council – due Dec. 3
The Secretary of Health & Human Services (HHS) has posted a Notice requesting nominations for individuals to serve on the Family Caregiving Advisory Council, which was created by the RAISE Family Caregivers Act. Pursuant to the law, the Council’s 15 members will include at least one person from each of the following categories: family caregivers; older adults who need long-term services and supports; individuals with disabilities; health care and social service providers; providers of long-term services and supports; employers; paraprofessional workers; state and local officials; accreditation bodies; veterans; and as appropriate, other experts and advocacy organizations engaged in family caregiving. Nominations must be submitted by Monday, December 3, 2018. A description of the Council, member responsibilities, and procedures for submitting comments can be found in the 10/12/18 Federal Register.

Comments on the “Public Charge” Rule – due Dec. 10
Since this is such a far-reaching proposal, it is important that as many individuals as possible submit comments for the record about how it would impact them or the populations they work with. Comments will be accepted on this page of through December 10 at 11:59 pm EST.

Comments on New Standards for ACA Innovation Waivers (§1332 waivers) – due Dec. 24
On October 22, the Centers for Medicare & Medicaid Services (CMS) and the U.S. Department of the Treasury (collectively, the Departments) released new guidance (press release; fact sheet) on waivers authorized by section 1332 of the Affordable Care Act (ACA), which was intended to let states design innovative ways to insure their residents. The newly termed “State Relief and Empowerment Waivers” will let states allow the sale of insurance policies that do not meet all of the ACA’s standards, using criteria that are more flexible than those established by the Obama administration. These alternative plans may provide less robust coverage than would be allowed under the previous guidance, and would not necessarily have to cover pre-existing conditions. The new standards became effective on October 22, but the administration is accepting comments on them through December 24. For background information, see Why the New ACA Waivers Matter (Axios, 10/23/18); CMS Expands Flexibility for State ACA Innovation Waivers (FierceHealthcare, 10/22/18); Trump Officials Make It Easier for States to Skirt Health Law’s Protections (New York Times, 10/22/18). For a very thorough explanation of the new guidance, see Administration Proposes Significant Policy Changes for State Insurance Markets through New 1332 Waiver Regulations (National Academy for State Health Policy blog, 10/23/18).

Comments to FDA about Sesame Allergies – Due Dec. 31
The Food and Drug Administration (FDA) has issued a “Request for Information” requesting input from the public about whether it should require that sesame be listed as an ingredient on food labels to help protect those with sesame allergies. Comments can be submitted here.


MCHB Grand Challenges – deadline extended to Nov. 9 for CYSHCN Challenge

As reported earlier, the Maternal and Child Health Bureau will award four prizes in a Grand Challenges competition to develop innovative, low-cost, and scalable solutions to improve the health of mothers and children across the U.S. The Care Coordination for CSHCN Challenge deadline has been extended until Nov. 9 at 8:00 pm ET (5:00 pm PT). This challenge supports the creation of technology innovations to meet the needs of children with special health care needs and their families. You only need a 5-page description that meets the Submission Requirements and Review Criteria for the CSHCN challenge. Submissions for the challenge relating to Remote Pregnancy Monitoring are due on Nov. 27 (5:00 pm ET) [sic] and submissions for the challenge relating to Opioid Use Disorder in Pregnant Women and New Moms are due Nov. 19 (5:00 pm ET) [sic]. The Childhood Obesity Challenge is no longer accepting applications.

American Academy of Pediatrics Reaffirms Care Coordination Policy Statement and Offers Implementation Resource for Pediatric Clinicians
The American Academy of Pediatrics (AAP) recently reaffirmed its policy statement on care coordination. For pediatric clinicians, care coordination is an important component of the medical home model and has been shown to improve family and provider satisfaction, facilitate a child’s access to services, and improve health care outcomes. The Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems (AAP Policy Statement) has laid the foundation for various care coordination tools and resources developed collaboratively by the National Center for Care Coordination Technical Assistance (NCCCTA) and the National Center for Medical Home Implementation. These free resources include:

These tools and resources are available in the public domain to assist clinicians and other practice staff with care coordination activities. Additional care coordination tools and resources can be found on the NCCCTA Web site. For technical assistance and support, contact


For the Disabled, A Doctor’s Visit Can Be Literally an Obstacle Course — And the Laws Can’t Help (Washington Post, 10/28/18)

Ninth Child Dies in New Jersey Facility Suffering Adenovirus Outbreak (ABC News, 10/28/18)

Guns Send Over 8,000 US Kids To ER Each Year, Analysis Says (Associated Press, 10/29/18)

Complete your gift to help keep families at the center of children’s health care

I'm ready
Not today

Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

In honor of